Well Im almost there. One more infusion due to take place on November 23rd and then I will be able to start having my infusions from home. The good thing is that its going to mean less time off work and I can adapt my treatment schedule and allow the weekend for more rest.
The biggest discussion recently has been around whether I should be switched to having the IVIG weekly fortnightly, or whether to increase the amount of Privigen that Im having each time. My IGg counts have shown improvement despite sliding a couple of months ago. The level is now up to 8.6 and my Consultant and Specialist Nurse would like to see my level around 9. As such with the winter coming up we have agreed on a 10g increase to my 3 weekly schedule, taking me up to 60g every three weeks. If this doesnt work, I will more then likely switch to a fortnightly treatment.
The reason for my slow response may finally have been discovered. Although my CT scan of the lungs showed no scarring or anything, however there were small amounts of cells (I've forgotten the actual name, but I think they were called Granulocytes) in my lungs. These cells have a tendency to remove immunoglobulin by absorbing it, removing it from the immune system. Apparently this is quite symptomatic of CVID.
My major bugbear of the last few weeks has been cold sores, with me picking up a couple in the last two to three weeks. My GP has given me a course of Acyclovir tablets, which although they seemed to have eased the issue, have certainly made me feel quite under the weather. Hopefully they will resolve the issues going forward. Fingers crossed Im now in a position to get through the winter fairly easily.
Thursday 11 November 2010
Thursday 16 September 2010
Exhausted
Well its been a while since I got around to updating this. Now Ive finally got some time, to sit down and update :).
Its been a hectic couple of weeks for me and my CVID and its hard to know where to start really. Im due for infusion next week and Im a little bit nervy after my last infusion experience. In the run up to the infusion, I had been feeling heavily exhausted and very unwell. When I visited the hospital for the infusion, the nurses didnt feel that I was well enough, or indeed strong enough to have my infusion at that time. I was somewhat surprised as I certainly felt well enough, however I will not go against my nurses judgement. The infusion was delayed by 3 days to ensure that my infection markers were not indicating any infection in my system. Although the infection markers were ok, my IGg count had dropped which I dont feel is particularly encouraging.
Last week, I finally got around to getting the ultrasound of my spleen done. My consultant wants to check why I havent shown the expected levels of response. One theory is that there could be clots in the spleen which are absorbing the immunoglobulin, keeping it away from the immune system. From the ultrasound, apparently although my spleen is the correct length, it looks 'bulky'. Im sure I will hear more on that in due course. Next week I have CT scan of my lungs to ensure there is no damage there.
One thing I did get a roasting from my consultant over was the importance of sleep in helping me recover, and apparently I am showing some signs of insomnia. As such I have cut out caffeine after lunch and found that I do sleep ok with that. I just need to try and get a few early nights.
I guess my one bugbear with the IVIG is my slow pace of improvement. After 5 months I still dont feel any real improvement. I know it will take time and I need to be patient, I guess I just hate feeling so drained so often
Its been a hectic couple of weeks for me and my CVID and its hard to know where to start really. Im due for infusion next week and Im a little bit nervy after my last infusion experience. In the run up to the infusion, I had been feeling heavily exhausted and very unwell. When I visited the hospital for the infusion, the nurses didnt feel that I was well enough, or indeed strong enough to have my infusion at that time. I was somewhat surprised as I certainly felt well enough, however I will not go against my nurses judgement. The infusion was delayed by 3 days to ensure that my infection markers were not indicating any infection in my system. Although the infection markers were ok, my IGg count had dropped which I dont feel is particularly encouraging.
Last week, I finally got around to getting the ultrasound of my spleen done. My consultant wants to check why I havent shown the expected levels of response. One theory is that there could be clots in the spleen which are absorbing the immunoglobulin, keeping it away from the immune system. From the ultrasound, apparently although my spleen is the correct length, it looks 'bulky'. Im sure I will hear more on that in due course. Next week I have CT scan of my lungs to ensure there is no damage there.
One thing I did get a roasting from my consultant over was the importance of sleep in helping me recover, and apparently I am showing some signs of insomnia. As such I have cut out caffeine after lunch and found that I do sleep ok with that. I just need to try and get a few early nights.
I guess my one bugbear with the IVIG is my slow pace of improvement. After 5 months I still dont feel any real improvement. I know it will take time and I need to be patient, I guess I just hate feeling so drained so often
Monday 9 August 2010
So what is it really like Part 2
The fact that tomorrow is infusion day, gave me a nudge to update my blog. Its felt a very weird three weeks. Despite having my increased amount of Privigen, I havent felt any kind of benefit. For many days, particularly early in the morning, I felt like Im walking through quicksand.
Currently for the first two or three days following infusion Im finding it very difficult. I tend to have no energy at all, and then when I do have some over the first 48 hours or so, I swing between having energy and then becoming drained with no energy what so ever. Generally after that, I feel better than I have done for a long time, with a normal sleeping pattern really helping. When I do feel that I have energy, its still amazing how quickly it can disappear. A short walk to the local shop or the train station can be enough to tire me out. However its been positive to notice that as I am adapting to the infusions, the energy does seem to last a little bit longer.
That is until I get into the third week of the infusion. One of the downsides of the infusion that isnt the case with the sub-cut method, is that after the big 'spike' in the antibody count over the three weeks, the counts start to drop, and that causes me to feel more drained in the run up to the infusion. It does feel a big difference when I get into that final week.
The big downside so far, has been my body's slow response since I started IVIG. My infusion nurse wants my antibody count to remain (at the lowest) at 9 in the third week (keeping me further away from slipping back to an 'unhealthy' level. Despite having had an increased level, my last blood test three weeks ago showed that I had still yet to reach that magical figure. It appears that the replacement antibodies are being absorbed and taken elsewhere. I am awaiting an ultrasound to have a look at my Spleen and Liver. It could be that groups of blood cells in my Spleen are absorbing the Immunologlobulin, meaning that it sint all getting where it is needed and there is no chance of my increased amount being reduced. Its a shame however Im slowly moving in the right direction.
I just hope that tomorrows infusion goes well, and I feel a little better this time. My mother and I are are currently being trained on how to set all the equipment up. My mother has the task of being my 'infusion buddy' and will put the butterfly in for the first time tomorrow. Hears hoping that from the weekend onwards I will feel a little more 'normal' again
Currently for the first two or three days following infusion Im finding it very difficult. I tend to have no energy at all, and then when I do have some over the first 48 hours or so, I swing between having energy and then becoming drained with no energy what so ever. Generally after that, I feel better than I have done for a long time, with a normal sleeping pattern really helping. When I do feel that I have energy, its still amazing how quickly it can disappear. A short walk to the local shop or the train station can be enough to tire me out. However its been positive to notice that as I am adapting to the infusions, the energy does seem to last a little bit longer.
That is until I get into the third week of the infusion. One of the downsides of the infusion that isnt the case with the sub-cut method, is that after the big 'spike' in the antibody count over the three weeks, the counts start to drop, and that causes me to feel more drained in the run up to the infusion. It does feel a big difference when I get into that final week.
The big downside so far, has been my body's slow response since I started IVIG. My infusion nurse wants my antibody count to remain (at the lowest) at 9 in the third week (keeping me further away from slipping back to an 'unhealthy' level. Despite having had an increased level, my last blood test three weeks ago showed that I had still yet to reach that magical figure. It appears that the replacement antibodies are being absorbed and taken elsewhere. I am awaiting an ultrasound to have a look at my Spleen and Liver. It could be that groups of blood cells in my Spleen are absorbing the Immunologlobulin, meaning that it sint all getting where it is needed and there is no chance of my increased amount being reduced. Its a shame however Im slowly moving in the right direction.
I just hope that tomorrows infusion goes well, and I feel a little better this time. My mother and I are are currently being trained on how to set all the equipment up. My mother has the task of being my 'infusion buddy' and will put the butterfly in for the first time tomorrow. Hears hoping that from the weekend onwards I will feel a little more 'normal' again
Thursday 15 July 2010
So what is it really like..... Part 1
According to Wikkipedia, the prelevance of CVID worldwide is 1 in 50,000. Well I guess that I have always wanted to feel unique!!
As such people around do often want to know what its like to have something like CVID and what effects it has. I guess the best way to look at it is before treatment and how I am finding this now that I am being treated.
Potentially I could have had my CVID since birth. Although I dont remember being particularly sickly as a child, I do remember having regular migraines and some regular throat and tonsil issues. Many times my tonsils were threatened with removal, only for the infection to go and my tonsils are still with me. Fast forward to the age of 14, and I was diagnosed with Glandular Fever, which I apparently managed to catch again two years later.
I dont remember being particularly ill while I was at sixth form or uni, however from the age of 23 onwards, I remember a number of different illnesses. It started with a nasty chest infection in December 2003. I was coughing horrendously, and burning up. From then on I remember being ill probably more times than I remember being well.
When I was first told that I may have CVID due to my low immunoglobulin counts, I didnt think that was the case, as although I had felt unwell often, I didnt feel as though I'd had many infections (one of the symptoms of CVID is repetitive and chronic infection.). The main sysmptom I remember is a massive level of tiredness. No matter how much sleep I had it would never go and worsen through the week. Coupled with the poor sleep pattern I had that time, I would end up spending most of my weekends sleeping purely as I was drained, it all started to run me down. I was later told by my infusion nurse that the tiredness was actually being caused by my body continually fighting infection. The infections would never really go and would simply come back again.
Many times I had to miss out on social events, as I just didnt feel that I could go. I sure that I lost so many friends purely as I felt unable to socialise due to the level of drainedness that I had. It was a vicious circle, as the more drianed I felt, the more it seemed to get to me.
For me though, the single worst symptom are the completely random aches and pains that seem to accompany CVID. There is nothing weirder than randomly developing an ache in the middle of my bicep. Any one who knows me well enough, knows I love my even football, but even that became a chore at times. My legs and feet would ache so much and, I would be so drained that by the end of the game I felt I could hardly walk. I felt so much older then my 29 years.
I was told that the treatment would ease those sysmptoms over time. I guess we will just have to see...........
As such people around do often want to know what its like to have something like CVID and what effects it has. I guess the best way to look at it is before treatment and how I am finding this now that I am being treated.
Potentially I could have had my CVID since birth. Although I dont remember being particularly sickly as a child, I do remember having regular migraines and some regular throat and tonsil issues. Many times my tonsils were threatened with removal, only for the infection to go and my tonsils are still with me. Fast forward to the age of 14, and I was diagnosed with Glandular Fever, which I apparently managed to catch again two years later.
I dont remember being particularly ill while I was at sixth form or uni, however from the age of 23 onwards, I remember a number of different illnesses. It started with a nasty chest infection in December 2003. I was coughing horrendously, and burning up. From then on I remember being ill probably more times than I remember being well.
When I was first told that I may have CVID due to my low immunoglobulin counts, I didnt think that was the case, as although I had felt unwell often, I didnt feel as though I'd had many infections (one of the symptoms of CVID is repetitive and chronic infection.). The main sysmptom I remember is a massive level of tiredness. No matter how much sleep I had it would never go and worsen through the week. Coupled with the poor sleep pattern I had that time, I would end up spending most of my weekends sleeping purely as I was drained, it all started to run me down. I was later told by my infusion nurse that the tiredness was actually being caused by my body continually fighting infection. The infections would never really go and would simply come back again.
Many times I had to miss out on social events, as I just didnt feel that I could go. I sure that I lost so many friends purely as I felt unable to socialise due to the level of drainedness that I had. It was a vicious circle, as the more drianed I felt, the more it seemed to get to me.
For me though, the single worst symptom are the completely random aches and pains that seem to accompany CVID. There is nothing weirder than randomly developing an ache in the middle of my bicep. Any one who knows me well enough, knows I love my even football, but even that became a chore at times. My legs and feet would ache so much and, I would be so drained that by the end of the game I felt I could hardly walk. I felt so much older then my 29 years.
I was told that the treatment would ease those sysmptoms over time. I guess we will just have to see...........
Wednesday 30 June 2010
I can still remember my first time.....
Everybody who knows me well enough, will know that I am (negatively) superstitious about the number 13. As such, you can imagine that I was less than impressed when I was told that I would be starting IVIG on Tuesday April 13th.
After agreeing to go for the seemingly more flexible three weekly infusion option, and following a check that my veins were easily accessible, I was pretty much ready to go.
Despite understanding the need for the treatment, and also knowing how it was going to work I was extremely nervous as the big morning arrived. I was told that I needed to do two things before I arrived at the hospital for treatment - drink plenty and have a big breakfast. The drinking was not an issue, however the eating was massively more problematic as I didn't feel hungry. Probably due to the nerves.
When I arrived at the hospital, I had a chat with my infusion nurse, before the Immunology consultant took me through consent for treatment. It consisted of him asking me questions surrounding the treatment. The pinging of a faulty blood pressure monitor provided an amusing back-drop as I answered. It was then time to start the treatment.
As my counts were so low, I wasn't being given my full dose of 35g, I was being given 20g to get me started (Ive now been moved up to a 50g dose, but that's a story for another day).
Despite my nerves, the Butterfly needle went in first time, and everything was set up with no issues at all. So far so good. Id never been through a process like this in my life, and I was a little surprised that I couldn't feel the liquid being dripped into my vein, so I was relatively surprised at not feeling anything. It was all to change........
Twenty minutes or so into the infusion, I started to feel a tingling all around my chest, throat, lips and even where a wisdom tooth had been causing trouble. Not long after that, I started to feel really bad back-pain. The kind that feels like some inconsiderate, banging your spine with a hammer!! A couple of paracetamol as suggested by a patient who had been having the treatment for a while cured that thankfully. That's when it hit me - an overwhelming tiredness that I had never felt before. One minute I was reading a page of my paper, the next I have completely switched off. My infusion nurse will often joke about the fact that she can still remember that moment when the tiredness hit me.
Just imagine that all your energy drains away, and you feel that even shifting your seating position seems to take all you have. That will give some kind of idea. After the infusion just working to the car-park was difficult. The rest of the day was spent necking copious amounts of water to prevent dehydration and drifting between being awake and trying to sleep.
I had intended to work the day after, but there was no chance of that. Although Id had my best nights sleep for many a night, I was extremely lethargic and swung between feeling ok and then feeling my energy dip again, as the newly provided antibodies dealt with my infection load. Currently I'm now learning that while I adapt to the treatment 48 hours will be required for me to even become close to my old self. Whether this treatment would live up to my expectations, time will tell............
After agreeing to go for the seemingly more flexible three weekly infusion option, and following a check that my veins were easily accessible, I was pretty much ready to go.
Despite understanding the need for the treatment, and also knowing how it was going to work I was extremely nervous as the big morning arrived. I was told that I needed to do two things before I arrived at the hospital for treatment - drink plenty and have a big breakfast. The drinking was not an issue, however the eating was massively more problematic as I didn't feel hungry. Probably due to the nerves.
When I arrived at the hospital, I had a chat with my infusion nurse, before the Immunology consultant took me through consent for treatment. It consisted of him asking me questions surrounding the treatment. The pinging of a faulty blood pressure monitor provided an amusing back-drop as I answered. It was then time to start the treatment.
As my counts were so low, I wasn't being given my full dose of 35g, I was being given 20g to get me started (Ive now been moved up to a 50g dose, but that's a story for another day).
Despite my nerves, the Butterfly needle went in first time, and everything was set up with no issues at all. So far so good. Id never been through a process like this in my life, and I was a little surprised that I couldn't feel the liquid being dripped into my vein, so I was relatively surprised at not feeling anything. It was all to change........
Twenty minutes or so into the infusion, I started to feel a tingling all around my chest, throat, lips and even where a wisdom tooth had been causing trouble. Not long after that, I started to feel really bad back-pain. The kind that feels like some inconsiderate, banging your spine with a hammer!! A couple of paracetamol as suggested by a patient who had been having the treatment for a while cured that thankfully. That's when it hit me - an overwhelming tiredness that I had never felt before. One minute I was reading a page of my paper, the next I have completely switched off. My infusion nurse will often joke about the fact that she can still remember that moment when the tiredness hit me.
Just imagine that all your energy drains away, and you feel that even shifting your seating position seems to take all you have. That will give some kind of idea. After the infusion just working to the car-park was difficult. The rest of the day was spent necking copious amounts of water to prevent dehydration and drifting between being awake and trying to sleep.
I had intended to work the day after, but there was no chance of that. Although Id had my best nights sleep for many a night, I was extremely lethargic and swung between feeling ok and then feeling my energy dip again, as the newly provided antibodies dealt with my infection load. Currently I'm now learning that while I adapt to the treatment 48 hours will be required for me to even become close to my old self. Whether this treatment would live up to my expectations, time will tell............
Tuesday 22 June 2010
To IVIG or not to IVIG?
Following the diagnosis of CVID, the next step was to decide the methodology of treatment.
My diagnosis was confirmed in late March, after an attempt to stimulate my immune system using vaccinations had failed drastically. On top of that, despite daily antibiotic, I was still picking up infections. If anything my immunoglobulins had dropped even further. The appointment I thought would only last half an hour or so turned into several hours.
You kind of get a feeling things are not great when your doctor keeps re-checking your notes. Even though deep down I knew what was coming it was still a shock when the full scale of the issue was laid out to me. Ever since my low immunoglobulin counts had been discovered access to the internet and wikkipedia gave me an idea what to expect.
The only way for my condition to be controlled from this point was to be given replacement antibodies. However there were two possible methods - a three weekly IVIG drip, or a weekly 'sub-cut' method where a pump delivers the fluid into sites on the abodmen.Having only started a new job a few weeks earlier I was immediately drawn to the three weekly option (the sub-cut method required a hospital visit every week for at least 10 weeks). As usual things are not that simple. Although my counts being so leant towards the three option (a larger amount to boost me immeadiately), my veins are moveable - something I would later painfully discover.
The doctor went through the whole process of anti-body harvesting from Euopean and American donors. I was then shown where the infusion takes place before my infusion nurse checked my understanding with a series of questions, which would later be repeated when I gave my consent to treatment some three weeks later.
One of the lighter moments in the run up to the start of my now life-long treatment, was having to have my veins examined!! Having a nurse gently rubbing your arm and hand is a stranegly pleasant feeling guys!! ;). However it is important for the nurse to establish the quality of the veins as they have to stand up to long term useage. However Im intrigued to find out what vein exercises are!!!
My diagnosis was confirmed in late March, after an attempt to stimulate my immune system using vaccinations had failed drastically. On top of that, despite daily antibiotic, I was still picking up infections. If anything my immunoglobulins had dropped even further. The appointment I thought would only last half an hour or so turned into several hours.
You kind of get a feeling things are not great when your doctor keeps re-checking your notes. Even though deep down I knew what was coming it was still a shock when the full scale of the issue was laid out to me. Ever since my low immunoglobulin counts had been discovered access to the internet and wikkipedia gave me an idea what to expect.
The only way for my condition to be controlled from this point was to be given replacement antibodies. However there were two possible methods - a three weekly IVIG drip, or a weekly 'sub-cut' method where a pump delivers the fluid into sites on the abodmen.Having only started a new job a few weeks earlier I was immediately drawn to the three weekly option (the sub-cut method required a hospital visit every week for at least 10 weeks). As usual things are not that simple. Although my counts being so leant towards the three option (a larger amount to boost me immeadiately), my veins are moveable - something I would later painfully discover.
The doctor went through the whole process of anti-body harvesting from Euopean and American donors. I was then shown where the infusion takes place before my infusion nurse checked my understanding with a series of questions, which would later be repeated when I gave my consent to treatment some three weeks later.
One of the lighter moments in the run up to the start of my now life-long treatment, was having to have my veins examined!! Having a nurse gently rubbing your arm and hand is a stranegly pleasant feeling guys!! ;). However it is important for the nurse to establish the quality of the veins as they have to stand up to long term useage. However Im intrigued to find out what vein exercises are!!!
Sunday 30 May 2010
How did it come to this?
"For someone of your age survival rates from Leukemia are pretty good" said my doctor, as I sat listening, not really understanding what was going on. It was February 2004 and I had been called into my doctors urgently following a blood test.
The previous summer I had noticed some changes that were quite scarey. I always seemed to have a cold, I was always tired and when off work I would sleep all night and then sleep in the middle of the day, I had no energy and my normally laid back personality became more aggressive and snappy. My first blood test showed me to be iron deficient anaemic. Nothing a simple course of tablets couldnt sort out.
The date of my follow up test was one month later. The short walk from the station to the doctors surgery left me breathless - obviously no real change. Little did I know how much of an effect this test would have on the rest of my life. The fact nobody would give me the results should have a warning sign.
Eventually an urgent phone call from my doctor gave the bad news. My WBC, platelet and neutraphil counts were extremely low and I required urently an appointment with an haemotologist as Leukemia was expected. The day arrived less than a week later and I was subjected to the horror of a painful bone marrow biopsy. Thankfully Leukemia was ruled out and ITP and autoimmune neutropenia was the diagnosis.
So how was the CVID found? In the summer of 2009, I took the brave step of making a dentists appointment due to horrible toothache. Due to the risk of bleeding caused by ITP, the dentist refused to do any work unless I went private. Nice. I spoke to my haemotologist who reviewed my case and was shocked to discover a massive drop in my antibody counts over the past five years. This certainly explained the consistant lack of energy and continual infections. I was refferred to an immunologist for further investigation.
After a whole battery of tests which included numerous vaccinations (all of which failed) and an extensive investigation of my familys health history the CVID diagnosis was confirmed. How and where it came from I dont know as gentic transfer has been pretty much ruled out. The next step is to work out how I want to have the replacement antibodies..............
The previous summer I had noticed some changes that were quite scarey. I always seemed to have a cold, I was always tired and when off work I would sleep all night and then sleep in the middle of the day, I had no energy and my normally laid back personality became more aggressive and snappy. My first blood test showed me to be iron deficient anaemic. Nothing a simple course of tablets couldnt sort out.
The date of my follow up test was one month later. The short walk from the station to the doctors surgery left me breathless - obviously no real change. Little did I know how much of an effect this test would have on the rest of my life. The fact nobody would give me the results should have a warning sign.
Eventually an urgent phone call from my doctor gave the bad news. My WBC, platelet and neutraphil counts were extremely low and I required urently an appointment with an haemotologist as Leukemia was expected. The day arrived less than a week later and I was subjected to the horror of a painful bone marrow biopsy. Thankfully Leukemia was ruled out and ITP and autoimmune neutropenia was the diagnosis.
So how was the CVID found? In the summer of 2009, I took the brave step of making a dentists appointment due to horrible toothache. Due to the risk of bleeding caused by ITP, the dentist refused to do any work unless I went private. Nice. I spoke to my haemotologist who reviewed my case and was shocked to discover a massive drop in my antibody counts over the past five years. This certainly explained the consistant lack of energy and continual infections. I was refferred to an immunologist for further investigation.
After a whole battery of tests which included numerous vaccinations (all of which failed) and an extensive investigation of my familys health history the CVID diagnosis was confirmed. How and where it came from I dont know as gentic transfer has been pretty much ruled out. The next step is to work out how I want to have the replacement antibodies..............
Subscribe to:
Posts (Atom)